After another afternoon of being left alone and then a long cuddle with me Cameron slowly became himself again and this morning he seems a lot happier. We need to be much more aware of Cameron's feelings and how all the treatment is affecting him. He's happy doing his cards, ball and broom handle at home with My Marvellous Man so that is good and it keeps me in the role that Cameron wants me to be - being Mum. He has rejected doing therapy with me before when he was younger - he wants a Mum, not a therapist and I can understand that considering the hours, days, weeks, months and years we have spent together doing therapy.
Yesterday was our third session at the Institute of Function Neuroscience this week and it was better. For starters Cameron wasn't as out of sorts as he had been the day before and secondly because our doctor saw why I'd been having trouble with the hand machine.
It seems silly that a little machine that puts electrical pulses through your hand could cause me so much angst but it did. I sat back and thought about why Cameron was getting agitated by the machine and why it was pulling up dark, black feelings in me and visions of hospital entered my head.
After Cameron has a seizure he sleeps for up to twenty four hours and then the medications start to wear off and he wakes up. Because he usually has his seizures in the middle of the night he often wakes up in the middle of the night. Being in the middle of a ward of sleeping children when Cameron wakes up is no fun and then you add parental stress and sleep deprivation on top.
Once Cameron is awake he tries to get off the bed but he is attached to monitoring machines and a kangaroo pump. He gets angry that he can't move freely and starts to vocally object and that is stressful because it's loud and it disturbs the other patients. Then he notices what is attached to him and starts to disconnect himself. So I have to become an octopus trying to pin his arms down and stop him pulling out cables and tubes whilst trying to stay calm and keep him quiet. It usually becomes a war that results in me getting emotional and hugely frustrated. And I have to deal with it all quietly and on my own.
The hand machine was bringing back those same emotions because I was trying to keep him quiet and in one place whilst stopping him from pulling off the cables.
Yesterday I explained to his doctor that if I was to bring in enough books to keep Cameron occupied for ten minutes I'd need a wheelbarrow because his attention span is very short. Even the magazines that he looks at in reception get turned rapidly and he doesn't actually look at the pages. Everyone who knows Cameron knows that this is how he reads magazines.
After a chat we decided to try picture cards for as long as I could hold Cameron's attention but he has to use his left hand to point because we are trying to stimulate specific pathways in his brain. He started off really well until the doctor left the room and then he wouldn't co-operate. My Little Angel and I were doing our best but it wasn't working and he pulled the cables off his hand.
The doctor popped back in to see how we were doing and I think my exasperated expression probably explained it all. He then became unco-operative for her and quite determined to remove the cables. She bandaged the cables which helped a little and then she agreed with me that we could only do what we could do. We gave Cameron a ball to hold in his right hand to try and distract that hand from pointing and it worked for a while and then we abandoned any thought of pointing and just left him on the machine, as long as he sat in one spot he could do what he wanted. Finally the tension in the room relaxed and My Little Angel devised a game with the ball to distract Cameron.
When the doctor returned she commented that it is a Team Effort - it certainly is!!!